Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).

I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?

Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!

Bill

Interested in more discussions like this? Go to the Digestive Health group.

@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

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@hopeful33250 Hi Teresa, I’ve changed my diet and my eating habits. The first thing I learned is to only eat small amounts. Too much food causes bloating and pain. I have also eliminated cooking or eating spicey foods. I cook with Mrs Dash and that seems to work for me. No onions or garlic. I’ve also found I can eat a can of soup with no problems. I also avoid beef and fast food. No cheese or dairy. It has definitely taken some adjustments especially during holidays. I’ve found if I’m very careful about the choices I make I do pretty good. Finally regularity is a must for me. Two days missed I start feeling those symptoms!

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@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

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Sounds like my diet is close to yours @hopeful33350 and with Christmas starting I’m struggling already! But I just have to be surprised-I’m not sure I’ve ever gone two days! I’m the big D and lookout several times a day-that’s my “normal”. I can’t even imagine two days without it! Wow! Not like something I usually talk about but I wonder how many others are my “normal”- or yours!? I just assumed (silly me) everyone else was like me! Interesting! Learn something new everyday! Thanks!

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@viva and @pcfromfm

Thanks to you both for sharing how you control your symptoms with a very specific diet. It sounds just the way I eat. It takes a little will power, but it is well worth it, isn’t it?

May I ask, how does caffeine affect your symptoms?

Teresa

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@hopeful33250 Hi Teresa I’ve also eliminated caffeine from my diet. Avoiding these foods from my diet is very disheartening sometimes but definitely worth it in the long run! Feeling better and being able to function with some sense of normalcy makes it all worthwhile!

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@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

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@pcfromfm I am amazed at your “normal”! I struggle with this issue on a daily basis. I’ve been prescribed several really harsh medications to try and combat this problem. But I look at it as just another part of MP that I must deal with in order to feel better. So lucky you!

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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I wish everyone a very Merry Christmas and a Healthy and Happy New Year!!!!

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@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

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Small, almost snack like eating (rather than full plate meals) work better for me as well…

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Thanks for your reply, @viva

Sometimes a little caffeine is quite helpful but at other times it is a trigger for symptoms. I appreciate your feedback regarding the caffeine.

Teresa

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@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

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Lol! Sorry! Not funny but all good! Yes meds are (to treat D) terrible as well so we motor on!

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@hopeful33250

@viva and @pcfromfm

Thanks to you both for sharing how you control your symptoms with a very specific diet. It sounds just the way I eat. It takes a little will power, but it is well worth it, isn’t it?

May I ask, how does caffeine affect your symptoms?

Teresa

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Caffeine is difficult at times for me-quite I’m consistent! I do need it for migraines that often accompany systems. They are so difficult I’d take take arsenic if someone told me, in the middle of it, that it would cure a migraine! Not to be flippant-caffeine helps the headache that is extreme for sure. I had a spell when younger that I was without them but they come in clusters now.

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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I got my wife she help out but by now she’s stressed out doing all the work at home my doctor comes back on the 3rd so I have to ask many ? Now . The only thing that takes my pain away is the prednisone.

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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@fernandoparce , Merry Christmas. I’m glad you have your wife to help. The disease is difficult for everyone involved but you must try to move forward the best you can. The Prednisone is helping, that is good and encouraging to hear. I hope you are able to eat a little food, nothing spicy.

Best wishes for you
Von. @vdouglas

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